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Research in Developmental Disabilities 143 (2023) 104620

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Research in Developmental Disabilities


journal homepage: www.elsevier.com/locate/redevdis

Symptoms of anxiety and depression and quality of life in parents


of children with autism during the second wave of the pandemic
Milena Pereira Pondé a, *, Victoria Faustino da Silva Reis b,
Nathalia Magalhães Andrade e Silva b, Gustavo Marcelino Siquara a
a
Bahia School of Medicine and Public Health (BAHIANA); Coordinator of the Interdisciplinary Research Laboratory in Autism (LABIRINTO),
Salvador, Bahia, Brazil
b
Bahia School of Medicine and Public Health (BAHIANA); Member of the Interdisciplinary Research Laboratory in Autism (LABIRINTO), Salvador,
Bahia, Brazil

A R T I C L E I N F O A B S T R A C T

Keywords: Background: Local political discord together with isolation and fear marked the COVID-19
Anxiety pandemic in Brazil.
Depression Aims: To determine the prevalence of anxiety and depression symptoms and analyze adult quality
Quality of life
of life (QoL) during the pandemic in four groups: “childless”, “children without mental problems”,
Parents
Autism
“children with autism” and “children with other mental problems.”
Pandemic Methods and procedures: A sample of 867 individuals recruited using social media in northeastern
COVID-19 Brazil completed the following instruments: the Hospital Anxiety and Depression Scale (HADS,
Brazilian version), the WHOQOL-Bref, and a sociodemographic form
Outcomes and results: The mean score for depression was significantly higher in the “children with
autism” group compared to the other groups. The mean anxiety score was significantly higher in
the “children with autism” and “childless” groups. Mean QoL scores were lower in the “children with
autism” group compared to the other groups for all the domains, with this difference being sta­
tistically significant compared with the “children without mental problems” group for all the
domains.
Conclusions and implications: Anxiety and depression symptoms were greater and QoL scores were
lower in parents of children with autism. All groups benefitted from logistic support during the
pandemic, whereas having to care for others negatively impacted QoL.

What this paper adds


This study contributes to the literature published prior to the COVID-19 pandemic that had already reported a high prevalence of
stress, and symptoms of anxiety and depression in parents of children with autism, as well as a poorer quality of life compared to
parents of neurotypical children. This study evaluates the impact of the pandemic on the life of Brazilian adults in the northeast
of the country. The specific context of the pandemic in Brazil was marked by political discord, which ultimately led to constant
conflicting information being conveyed to the population, together with social isolation, fear of infection and grief. Depression
and anxiety levels during the pandemic were higher in parents of children with autism compared to other groups of adults,
including those who were childless, parents of children without mental problems, and parents of children with other mental problems.

* Correspondence to: Av. D. João VI, 274, Brotas, Salvador, Bahia 40285-001, Brazil.
E-mail address: milenaponde@bahiana.edu.br (M.P. Pondé).

https://doi.org/10.1016/j.ridd.2023.104620
Received 29 April 2023; Received in revised form 26 July 2023; Accepted 18 October 2023
0891-4222/© 2023 Elsevier Ltd. All rights reserved.
M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

Caring for a child with special needs in an environment of restrictions and social isolation, and having no help with domestic
chores, was an aggravating factor for the mental health and quality of life of adults, particularly for parents of children with
autism. Indeed, in the case of families with atypical children, lacking support meant no access to the child’s usual face-to-face
therapies and having no help with household chores. Although demands varied between the four different groups analyzed here,
all benefited when help with housework was available. Conversely, having to care for other people had a negative impact on
quality of life in all the groups.

Data availability

Data will be made available on request.

1. Introduction

In April 2020, the increasingly large number of individuals infected with the SARS-Cov-2 virus in Brazil led the Ministry of Health,
in line with the World Health Organization (WHO) guidance, to recommend the adoption of social protection policies aimed at
containing the pathogen. Lockdown was instituted in May 2020 (Conselho Nacional de Saúde, 2020). Social isolation and other in­
dividual protective measures, including the use of masks and constant hand washing, introduced new norms in homes, workplaces and
learning institutes, demanding abrupt routine changes (Cameron et al., 2020). The systemic manifestations of COVID-19, which
included its potential to affect the central nervous system, generated an increase in the development of psychiatric and neurological
disorders (Holmes et al., 2020). Concomitantly, there was an increase in psychic distress and the quality of life of the population was
negatively impacted (Mohler-Kuo et al., 2021).
The psychiatric manifestations most commonly reported during the pandemic were anxiety, posttraumatic stress disorder, panic
disorder and depression, associated particularly with the innumerable deprivations and the overload of information in the media
(Hossain et al., 2020). A meta-analysis carried out in China pointed to a correlation between quarantine during the COVID-19
pandemic and symptoms of anxiety and depression, with the prevalence of the reported symptoms increasing as a function of the
duration of social isolation (Yuan et al., 2020). The high prevalence of symptoms of depression (47%), anxiety (47%) and psycho­
logical stress (44%) in individuals with COVID-19 was associated with the fear of death (Hosen et al., 2021). Other risk factors for the
development of psychiatric symptoms in the general population during the COVID-19 pandemic consisted of: being under 40 years of
age, being female, being financially insecure, being in a family nucleus of more than five people, living in an urban setting, having
comorbidities, having been previously diagnosed with a psychiatric disease, and being exposed to the communication media for more
than two hours/day (Hossain et al., 2020). Added to this, the mean prevalence of suicidal ideation was 12.1%, with students being the
group most likely to experience such thoughts (Farooq et al., 2021). Fear of contagion, lack of private health insurance or difficulty
accessing healthcare, social isolation and alcoholism were identified as predictors of suicidal thoughts (Farooq et al., 2021).
Confining families to their respective homes introduced emotional demands triggered by day-to-day coexistence within the
household in addition to the fact that people had to work from home, perform household tasks and care for children who, in turn, had
to adapt to distance learning (Mohler-Kuo et al., 2021; Cluver et al., 2020). Families in a situation of social vulnerability suffered even
more from the collapse of the healthcare system, increased unemployment, the shortage of essential items and the lack of school meals
(Núcleo Ciência pela Infância, 2020). These stressors tended to increase psychological tension in families, aggravating situations in
which the child was already suffering neglect as a result of financial difficulties and/or conflicted family relationships of violence and
mistreatment (Depape and Lindsay, 2015). Under these conditions, the social isolation caused by the pandemic, in addition to parents’
routine obligations, caused children and adolescents to be deprived of the opportunity to integrate and adapt to the external world
(Narzisi, 2020; Cahapay, 2020). A study conducted in Canada in 2020 found a prevalence of anxiety and depression of 43.37% and
36.27%, respectively, in mothers, irrespective of their children’s age (Cameron et al., 2020). In Brazil, an observational study showed
that young people with children under 6 years of age were more likely to develop anxiety, depression and posttraumatic stress disorder
compared to the parents of children over 7 years of age (Schönffeldt & Bücker, 2022).
Parents of children with ASD have higher levels of anxiety and depression symptoms, and lower level of quality of life than parents
of health peers and parents of children with other disabilities (Weiss, 2002; Vasilopoulou & Nisbet, 2016; Dey et al., 2019). In addition
to these vulnerabilities already described, during the pandemic, routine life may have been particularly demanding for parents of
children and adolescents with mental disorders such as autism spectrum disorder (ASD), since patients with ASD require multidis­
ciplinary care and inclusive, often quite individualized, education (Gomes et al., 2015; de Aguiar & Pondé, 2020). Due to quarantine,
most patients with ASD were unable to continue their therapies (Dal Pai et al., 2022). Furthermore, sleep disorders leading to a
secondary increase in stress levels significantly impacted the quality of life of these children and adolescents and their families (Yilmaz
et al., 2021). During quarantine, the parents of children and adolescents with ASD developed other problems that further impacted on
their mental health and well-being. These problems included changing or losing jobs, with consequent financial insecurity/instability;
the onset of or increase in symptoms of stress and anxiety; conflicted family relationships, including parent-child conflicts; and an
overburden of responsibilities (Lee et al., 2021). In addition, the principal factors predictive of psychiatric manifestations in this
population were: social and economic constraints, fear of infection, family isolation, school closure, interruption of rehabilitation
therapies, the death of loved ones, having to work from home and having to do household chores during this period (Yilmaz et al.,
2021).

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

In addition to the stressors caused by confinement, fear and grief due to COVID-19, Brazilians also experienced a period of intense
political insecurity, since, while the National Health Council followed the health regulations determined by the WHO, the legislative
and executive powers failed to agree on how to communicate and implement these measures, including those related to vaccination,
social distancing and the use of masks (Conselho Nacional de Saúde, 2021). This local situation of political discord, associated with the
worldwide conjuncture of isolation and fear caused by COVID-19, singularized the situation of the pandemic in Brazil. Therefore, the
objective of the present study was to analyse factors related with quality of life, anxiety and depression symptoms in parents and
childless adults in northeastern Brazil during the pandemic, focusing on parents of children with ASD.

2. Methods

This is a cross-sectional study in which depression and anxiety symptoms and quality of life were analyzed in adults during the
second wave of the COVID-19 pandemic, with particular emphasis on parents of individuals with autism. The participants in this
convenience sample were recruited through social media, beginning with the investigators involved in the project, as well as other
university professors and students, using the snowball effect to reach a broad segment of the population. The participants were
provided with a link that granted them access to the electronic questionnaire placed on the RedCap platform, licensed for research
purposes by the Bahia School of Medicine and Public Health.
This study was approved by the internal review board of the Bahia School of Medicine and Public Health under reference CAAE
31492720.1.0000.5544. The first item on the questionnaire concerned the informed consent form. After giving their informed consent,
the participants were then granted access to the study questions, which concerned sociodemographic data, questions related to the
pandemic and vaccination, the Portuguese version of the Hospital Anxiety and Depression Scale (HADS) validated for use in Brazil
(Botega et al., 1995, 1998), and the Brazilian version of the Quality of Life survey (WHOQOL-Bref) (Fleck et al., 2000). Quality of Life is
defined by the WHOQOL-Group as “an individual’s perception of their position in life in the context of the culture and value systems in
which they live and in relation to their goals, expectations, standards and concerns” (WHOQOL Group, 1995). The WHOQOL-Bref
consists of 26 questions, two of which are general about quality of life and the others address four domains of life: physical, psy­
chological, social relations and environment (Fleck et al., 2000).
For the data analysis, the study participants were stratified into four groups (childless, children without mental problems, children with
autism and children with other mental problems). For the numerical variables, one-way analysis of variance (ANOVA) was performed
followed by the Tukey post hoc test. The Tukey post hoc test is a statistical method used after ANOVA to identify which specific group
pairs have significant differences in their means. It helps prevent false positives when comparing multiple groups and ensures more
accurate conclusions in data analysis. η2, or estimated effect size eta-squared, is a statistical analysis used to quantify the proportion of
variance in the dependent variable that can be attributed to group differences. For the categorical variables, the differences were
evaluated using Pearson’s chi-square test. Multiple logistic regression analyses were performed to test which variables were predictive
of symptoms of anxiety or depression and to evaluate the scores of the four quality of life domains (physical, psychological, social
relationships and environment). The following variables were taken into consideration: age; sex (female/male); number of residents in
the home; religion (no/yes), smoking (no/yes); alcohol (no/yes); illegal drugs (no/yes); social distancing (no/yes); participation in
household chores: cleaning (no/yes), cooking (no/yes), caring for children (no/yes), caring for parents or other adults (no/yes),
studying (no/yes), having help with household chores (no/yes), having domestic staff coming to the house (no/yes); having had
COVID-19 before being vaccinated (no/yes); having had COVID-19 after being vaccinated (no/yes). The inclusion of variables into the
model was performed using the forward method.

3. Results

From a total of 1204 accesses to the questionnaires, 337 individuals failed to answer the forms/scales in a complete fashion and
were excluded. The final sample analyzed consisted of 867 adults, the majority of whom were female (75.6%), had a stable partner
(56.2%), had a postgraduate degree (55.6%), were affiliated with some form of religion (66.7%), were in formal employment (41.3%)
and had a monthly income of more than five minimum wages (72%), something that is not, unfortunately, representative of the
majority of the Brazilian population.
Table 1 shows the mean scores for anxiety and depression in the four groups classified in relation to their parenthood status:

Table 1
Mean scores of anxiety and depression symptoms in adults, according to the four groups evaluated.
Childless Children without mental Children with autism Children with other mental p- η2
(n ¼ 332) problems (n ¼ 108) problems value*
(n ¼ 357) (n ¼ 70)

Mean (SD) Mean (SD) Mean (SD) Mean (SD)


a.b a.c b.c.d
Depression 6.16 (3.73) 5.34 (3.94) 7.64 (4.19) 5.84 (3.70)d 0.005 0.03
Anxiety 8.22 (4.27)e 6.25 (4.10)e.f 8.12 (4.65)f 6.91 (4.06) 0.001 0.04

* One-Way ANOVA. Means with the same superscript letter in the same line indicate statistically significant differences between them (Tukey’s post-
hoc test):
a, c
, and d: p < 0.05; b, e and f: p < 0.001.

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

childless, children without mental problems, children with autism and children with other mental problems. One-way ANOVA showed the
existence of statistically significant differences in the mean scores for depression symptoms between the four groups (p = 0.005).
Tukey’s post-hoc test showed that the mean depression score was significantly higher in the “children with autism” group compared to
the other three groups. In relation to anxiety symptoms, the highest mean scores were for the “childless” and “children with autism”
groups, with the mean scores for both groups being significantly higher in relation to the “children without mental problems” group (p =
0.001) (Table 1).
The mean quality of life score was lower in the “children with autism” group in all four domains (physical, psychological, social
relationships and environment), as shown in Table 2. In the physical domain, mean scores were significantly lower compared to the
“children without mental problems”; in the psychological domain compared to the “children without mental problems” and “children with
other mental problems” groups; in the social relationships domain compared to the “childless” and “children without mental problems”
groups; and in the environment domain compared to the other three groups.
The multivariate analysis model used to identify the factors most capable of predicting higher levels of anxiety in the four groups
(Table 3) revealed that for the “childless” group, the variables most associated with high levels of anxiety symptoms were being younger
(В = − 0.273; p = 0.001) and needing to care for parents or other adults (В = − 0.125; p = 0.033). For the “children without mental
problems” group, it was caring for the child (В = 0.248; p = 0.001) and being female (В = − 0.149; p = 0.006). For the “children with
autism” group, it was being young (В = − 0.237; p = 0.016) and not having help with housework (В = − 0.217; p = 0.027). For the
“children with other mental problems” group, it was caring for the child (В=0.356; p = 0.003) and not having help with housework (В =
− 0.281; p = 0.019).
Table 4 describes the variables positively associated with higher levels of symptoms of depression in the four groups. For the
“childless” group, the principal variables positively associated with depression was having to cook at home (В = 0.122; p = 0.033). For
the “children without mental problems” group, it was being female (В = 0.136; p = 0.013), not being a user of illegal drugs (В = − 0.126;
p = 0.019) and not having help with housework (В = − 0.110; p = 0.042). For the “children with autism” group, it was caring for children
(В = 0.213; p = 0.029) and not having help with housework (В = − 0.243; p = 0.013). Finally, for the “children with other mental
problems” group, having to care for the child (В = 0.371; p = 0.003) was the principal variable positively associated with high
symptoms of depression.
The multivariate models constructed to identify factors predictive of better quality of life for the different groups (Table 5) showed
that for the “childless” group, in the psychological domain, being religious was positively associated with of higher scores (В = 0.143; p
= 0.012), while a greater number of individuals living in the home was positively associated with lower scores (В = − 0.139; p =
0.015). In the social relationships’ domain, needing to cook was the principal variable positively associated lower scores (В = − 0.121;
p = 0.038). In the environment domain, having domestic staff coming to the house was the principal variable positively associated with
higher scores (В = 0.274; p = 0.001) and having to care for parents or other adults with lower scores (В = − 0.137; p = 0.001).
For the “children without mental problems” group, in the physical domain caring for the child was the principal variable positively
associated with lower scores (В = − 0.187; p = 0.006), while in the psychological domain, being male (В = 0.153; p = 0.006) and
having had COVID-19 before being vaccinated (В = 0.112; p = 0.041) were the principal variable positively associated higher scores,
with having to care for the child associated with lower scores (В = − 0.149; p = 0.008). In the social relationships domain, having to
care for the child was the principal variable positively associated with lower scores (В = − 0.175; p = 0.001), while in the environment
domain, having domestic staff coming to the house (В = 0.273; p = 0.001) was positively associated with higher scores, while having to
care for the children (В = − 0.191; p = 0.001) and having to do the housework (В = − 0.114; p = 0.038) with lower scores (Table 5).
For the “children with autism” group, in the physical domain, help with household chores (В = 0.426; p = 0.001) and social
distancing (В = 0.301; p = 0.005) were positively associated with higher scores. In the psychological domain, having help with
household chores (В = 0.206; p = 0.038) and age (В = 0.204; p = 0.004) were the principal variables positively associated with higher
scores. In the social relationships’ domain, having to study was the principal variable positively associated with lower scores (В =
− 0.242; p = 0.018). In the environment domain, having domestic staff coming to the house (В = 0.271; p = 0.006), being older (В =
0.206; p = 0.035) and consuming alcohol (В = 0.231; p = 0.016) were positively associated with higher scores, while caring for
children (В = − 0.187; p = 0.048) for lower scores (Table 5).
For the “children with other mental problems” group, in the physical domain, having to do the housework (В = − 0.356; p = 0.015)
was the principal variable positively associated with lower scores. In the psychological domain, social distancing (В = 0.247; p =

Table 2
Mean scores in the quality of life domains for the four groups of adults evaluated.
Quality of life Childless Children without mental Children with Children with other mental p-value η2
domains (n = 332) problems autism problems *
(n = 357) (n = 108) (n = 70)
Mean (SD) Mean (SD) Mean (SD) Mean (SD)

Physical 48.66 (14.07) 52.58 (14.36)a.b 47.26 (15.21)b 49.46 (14.04) 0.006 0.02
Psychological 38.95 (16.22)c. 46.12 (15.10)c.e 37.69 (15.77)e.f 45.24 (14.17)d.f 0.001 0.05
d

Social relationships 41.08 (17.46)g 41.13 (17.60)h 34.17 (18.02)g.h 37.98 (15.97) 0.002 0.01
Environment 46.34 (14.42)i 45.75 (13.47)j 36.55 (15.34)i.j.k 46.26 (13.73)k 0.001 0.04
*
One-Way ANOVA. Means with the same superscript letter in the same line indicate statistically significant differences between them (Tukey’s
post-hoc test): a, b, d, and g: p < 0.05; c, e, f, h, I, j and k: p < 0.001.

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

Table 3
Predictors of anxiety symptoms in childless adults and in parents of children without mental problems, children with autism and children with other
mental problems.
Factors Childless Children without mental Children with autism Children with other mental
problems problems

Standardized В p-value Standardized В p-value Standardized В p-value Standardized В p-value


Age -0.273 0.001 -0.237 0.016
Caring for parents or other adults 0.125 0.033
Caring for child/children 0.248 0.001 0.356 0.03
Sex (male) -0.149 0.006
Having help with household chores -0.217 0.027 -0.281 0.019
R 0.263 0.001 0.314 0.001 0.346 0.002 0.488 0.001
R2 0.069 0.098 0.120 0.238
ΔR2 0.063 0.093 0.102 0.212

Table 4
Predictors of depression symptoms in childless adults and in parents of children without mental problems, children with autism and children with
other mental problems.
Factors Childless Children without mental Children with autism Children with other mental
problems problems

Standardized В p-value Standardized В p-value Standardized В p-value Standardized В p-value


Having to cook 0.122 0.033
Sex (male) -0.141 0.010
Caring for child/children 0.136 0.013 0.213 0.029 0.371 0.003
In use of illegal drugs -0.126 0.019
Having help with household chores -0.110 0.042 -0.243 0.013
R 0.122 0.033 0.272 0.001 0.328 0.004 0.371 0.003
R2 0.015 0.074 0.108 0.138
ΔR2 0.012 0.063 0.089 0.123

0.035) was the principal variable positively associated with higher scores, while having to do the housework with lower scores (В =
− 0.491; p = 0.001). In the social relationships’ domain, having to do the housework was the principal variable positively associated
with lower scores (В = − 0.331; p = 0.01). In the environment domain, caring for children (В = − 0.316; p = 0.014) was positively
associated with lower scores (Table 5).

4. Discussion

The results of the present study showed significantly higher mean scores for depression symptoms in the “children with autism”
group compared to the other groups, while the mean scores for symptoms of anxiety were significantly higher for the “children with
autism” and “childless” groups. The main variable positively associated with anxiety symptoms for the “children with autism” group were
not having help with housework and being younger, while having to care for children and not having help with the housework were
both positively associated with depression symptoms for this group.
Literature published prior to the pandemic had already reported a high prevalence of stress, and symptoms of anxiety and
depression in parents of children with autism, particularly those who cared for children with severe behavioral problems and did not
have the support of a partner in the home (Weiss, 2002; Machado Junior et al., 2016). These challenges faced by parents of autistic
children are related to caring for a highly demanding child as well as to the genetic vulnerability of these parents to mental disorders
(Dey et al., 2019; Xie et al., 2019). Added to this, during the pandemic individuals with ASD and their caregivers had to adapt to social
distancing measures such as complying with guidelines on hygiene and spending long periods of time at home, while face-to-face
therapies were suspended, reducing the social support and the help with housework that parents received (Alonso-Esteban et al.,
2021).
The “childless” group had a mean anxiety score similar to that of the “children with autism” group and significantly higher than the
scores of the rest of the sample. Being younger was one of the principal variables positively associated with anxiety, both in the
“children with autism” group and in the “childless” group. This finding probably reflects the effects of social isolation on younger people
and is in agreement with data from the literature (Hossain et al., 2020).
Having to care for other people proved to be positively associated with anxiety in this study. Having to care for children was
positively associated with anxiety symptoms both in the “children without mental problems” group and in the “children with other mental
problems” group. For the “childless” group, having to care for parents or other adults was positively associated with anxiety. This finding
may be specific to the pandemic period, reflecting the stress of isolation, associated with concerns regarding caring for more vulnerable
individuals (Mohler-Kuo et al., 2021; Cluver et al., 2020).
The mean quality of life scores were lower in the “children with autism” group compared to the other three groups for all the do­
mains, with this difference being statistically significant for all the domains when compared with the “children without mental problems”

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

Table 5
Predictors of quality of life in childless adults and in parents of children without mental problems, children with autism and children with other
mental problems.
Quality of life Factors Childless Children without Children with autism Children with other
domain mental problems mental problems

Standardized p- Standardized p- Standardized p- Standardized p-


В value В value В value В value

Physical Caring for child/ -0.187 0.006


children
Having help with 0.426 0.001
household chores
Social distancing 0.301 0.005
Having to do -0.356 0.015
housework
R - 0.187 0.006 0.479 0.001 0.356 0.015
R2 - 0.035 0.229 0.127
ΔR2 - 0.03 0.208 0.107
Psychological Sex (male) 0.153 0.006
Caring for child/ -0.149 0.008
children
Had COVID-19 prior 0.112 0.041
to vaccination
Religion 0.143 0.012
Number of people in -0.139 0.015
the home
Having help with 0.206 0.038
household chores
Age 0.204 0.04
Having to do -0.491 0.001
housework
Social distancing 0.247 0.035
R 0.207 0.002 0.242 0.001 0.313 0.007 0.518 0.001
R2 0.043 0.058 0.098 0.268
ΔR2 0.036 0.05 0.079 0.243
Social Having to cook -0.121 0.038
relationships Caring for child/ -0.175 0.001
children
Having to study -0.242 0.018
Having to do -0.331 0.01
housework
R 0.121 0.038 0.175 0.001 0.242 0.018 0.331 0.01
R2 0.015 0.031 0.059 0.11
ΔR2 0.011 0.028 0.049 0.094
Environment Having staff come to 0.274 0.001 0.273 0.001 0.271 0.006
the house
Caring for parents or -0.137 0.001
other adults
Caring for child/ -0.191 0.001 -0.187 0.048 -0.316 0.014
children
Having to do -0.114 0.038
housework
Age 0.206 0.035
Alcohol 0.231 0.016
R 0.292 0.001 0.393 0.001 0.497 0.001 0.316 0.014
R2 0.085 0.155 0.247 0.1
ΔR2 0.079 0.147 0.213 0.084

group. These findings corroborate the results of studies conducted prior to the pandemic, showing a poorer quality of life for parents of
children with ASD compared to parents of neurotypical children (Vasilopoulou & Nisbet, 2016; Schuster et al., 2015). Difficulties in
accessing healthcare services, financial problems and lack of social support have been shown to be important risk factors for the mental
health of parents in general prior to the pandemic (DePape & Lindsay, 2015). During the pandemic, the needs most reported by parents
included: a greater need for health support, particularly in their own homes, and interventions to combat and minimize the harmful
effects of quarantine (Alonso-Esteban et al., 2021). These aspects can have an even greater impact on the parents of children with
autism, since those children were denied access to their usual face-to-face therapies (Dal Pai et al., 2022), which, in addition to aiding
in these children’s development, constitute a support network for the parents.
Evaluating the factors that contributed towards a better quality of life for parents of “children with autism”, the role of social support
stood out, since receiving help with domestic chores was one of the principal variables positively associated with the physical, psy­
chological and environment domains. Regarding the social relationships’ domain, not being involved in studying, which would

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

presumably constitute yet one more task, was the principal variable positively associated with better scores for this domain. These
aspects, taken together, highlight the importance of social support for parents of “children with autism” in relation to the other groups.
Social support represents, on the one hand, the social sharing of emotions, which is so important for people who experience the day-to-
day challenges of parenting atypical children (Durlak, 1998). Furthermore, the physical burden of occupying most of the day with
parental demands suggests that the help of other people may possibly serve as a buffer against this overload (Machado Junior et al.,
2016).
For the “children with other mental problems” group, the principal variable positively associated with quality of life in all the domains
were being less involved with domestic chores and caring for children. These results highlight the significant contrast in quality of life
between parents who receive help with household chores and childcare and those who do not, as was seen in the “children with autism”
group.
For the “children without mental problems” group, caring for children was positively associated with a better quality of life in the
physical and psychological domains. Studies have shown that the presence of children in the home can generate greater feelings of
happiness in parents (Myrskylä & Margolis, 2014). Nevertheless, in the social relationships and environment domains, not having to
care for children and not having to do housework were factors that were predictive of higher scores. These findings reveal the complex
form in which demands with children are related to parents’ quality of life during the pandemic, even when the children are
neurotypical.
For the “childless” group, being religious, having fewer people in the home, not needing to cook, having staff coming to the house
and not needing to care for other adults were positively associated with a better quality of life.
Despite the different characteristics of the adults interviewed here with regards to their children, help with household chores
positively associated with a better quality of life in different domains for all the groups. Not needing to care for others, whether
children or parents, also proved to be positively associated with quality of life in all the groups. These results support the hypothesis
that the pandemic, in addition to presenting challenges to physical health, altered family dynamics and increased the workload of the
individuals responsible for the home and for the children (Narzisi, 2020; Cahapay, 2020).

4.1. Limitations

This is a cross-sectional study that analyzed a segment of time during the COVID-19 pandemic; therefore, obtaining long term
results on the factors evaluated here is impossible. Furthermore, since this is a convenience sample and the individuals were recruited
through social networks, particularly from among the members of this research group, the socioeconomic level of the sample analyzed
here is substantially higher than that of the country as a whole. This considerably restricts the potential to extrapolate these findings to
less well-off segments of the population. The data collection process through a cross-sectional survey, where all responses were ob­
tained from a single person, may lead to a shared variance problem, potentially impacting the interpretation of the results.

5. Conclusion

The COVID-19 pandemic exerted a significant impact on the life of many families, both in Brazil and around the world. The results
of this study show that depression and anxiety levels were higher in parents of children with autism compared to other groups during
the pandemic. Having to care for a child with special needs in an environment of restrictions and social isolation, together with a lack
of help with domestic chores, could represent an aggravating factor for the mental health and quality of life of these parents. In
addition, the study showed that, although demands varied between the different groups analyzed here, all benefited when able to
count on logistic support during the pandemic. Conversely, having to care for other people was shown to have a negative impact on
quality of life in all the groups.

Financial support

This work was supported by the Bahia School of Medicine and Public Health through an undergraduate research grant received by
VFSR, and by the Foundation for the Support of Research in the State of Bahia through an undergraduate research grant received by
NMAS (grant # FAPESB 3034/2022).

Role of the funding source

Neither the Bahia School of Medicine and Public Health nor FAPESB played any role in the study design, in the collection, analysis
and interpretation of data, in writing the report, or in the decision to submit the article for publication.

CRediT authorship contribution statement

Milena Pereira Pondé: Conceptualization, Methodology, Writing, Supervision. Victoria Faustino da Silva Reis: Investigation,
Writing. Nathalia Magalhães Andrade e Silva: Investigations, Writing. Gustavo Marcelino Siquara: Methodology, Formal analysis,
Writing.

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M.P. Pondé et al. Research in Developmental Disabilities 143 (2023) 104620

Declarations of interest

None.

Data availability

Data will be made available on request.

Acknowledgements

People who kindly participate in this research; and Bahia School of Medicine and Public Health, for all support.

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